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Once again I have been plagued with writer’s block, it’s not that I couldn’t decide on what to share it’s that I had too much going through my mind that I couldn’t put it down to a post.

January was a very busy month for us, and with each event came a different array of emotions.

Lauren’s birthday party was a success and I felt blessed and happy to be able to share it with her and with our family and friends, it was a wonderful Sunday afternoon. I made Lauren’s Birthday cake from scratch, something I dreamed of doing for her since I was pregnant.

The Monday after Lauren’s Birthday was a difficult day for me, I had been riding the holiday train which then seamlessly ran into Lauren’s birthday. Once the train was stopped, I felt lost. All my distractions were gone, and I was faced with reality again. We had a scheduled surgery for Lauren coming up to have her G-Tube put in (replacing her Nose Tube) and her fundoplication (this surgery helps to prevent her from aspirating on liquids that might reflux). I knew that the surgery was very straight forward and that she would be more comfortable once healed but it didn’t take away from the fact that I was allowing someone to cut a hole into my baby. She had a perfect belly and I didn’t want anyone to touch it.

Friday the 13th arrived and off we went to the Montreal Children’s for Lauren’s surgery, I must have kissed her belly a thousand times the night before and then another thousand times in the morning before she went into the hospital. She was so sweet and vulnerable looking in her hospital gown that I had to choke back tears, tears that later sprang when the surgery intern took her behind the frosted glass doors to the Operating area. Three hours or so later we were able to go see our princess, everything had gone well and she would just be in recovery for the next few days. What a relief!

Our hospital stay extended to a week instead of the initial three days, they wanted to run extra tests on Lauren. Her breathing overnight was irregular and her oxygen blood levels seem to dip in short clusters, at the same time she was extra irritable after her surgery. I think that we ran every test on Lauren, an EEG to check for seizures, blood sugar tests, blood gas tests, urine tests, then finally two sleep studies. At the end she cleared every test with flying colours, and although the sleep study did show that she held her breath for short periods overnight it was nothing that we should worry about.

Most people would probably feel stressed or annoyed at the longer stay in the hospital, lets face it having people coming in and out at all hours and sleeping on a pull out chair from the early 90’s does not have mass appeal. For myself, I found the experience calming, yes I said calming. I was in the right place if I had any questions and I didn’t have that sense of loneliness that can often creeps up when I’m home alone. At points I found myself correcting or teaching different doctors and nurses about Lauren’s medications and condition, and although it was frustrating at some points, it was also empowering.

As our week at the hospital wound down I felt confident and ready to go home. All the conversations with different doctors, whether it be explaining Lauren’s disorder or correcting them on which medications she needed made me better about my own abilities to care for her. Additionally, she was all healed up from her surgery and being in the hospital gave me the chance to get used to her new G tube, something that had initially made me feel uneasy.

The month ended with a visit with a Genetic Counsellor, this visit was made to help us understand how the disease is passed on, the probability of it occurring again and the options that were available to us to help when we planned to have more children in the future. The visit was okay, I have to admit that I had already done tons of research on this so a lot of it was mainly a review of things that Stephen and I had already known. It did help answer some questions, but to be honest the whole thing is depressing. It makes me so sad that Stephen and I just can’t have a baby like most people, maybe it’s selfish but it was so exciting and fun the first time. The next round is sure to have its own fun times, but it’s not going to be an easy process. I do pray that we are given another chance some day!

7 Responses to “Goodbye January!”

You write so well Amanda. It is a pleasure to read your blogs. I read with interest about future children. You know the odds just as I do. One in four !!! If I told you that you had a one in four chance of wining the lottery you would think that was pretty good. A one in four chance of having another Krabbe child, scary !! Evie was our first grandchild. When we lost her I never thought my daughter would have the courage to try again. How I underestimated her. We now have 2 fine, healthy grandchildren to be proud of. Last year in the UK we had 6 Krabbe children, we lost them all. Four of those families have gone on to have healthy babies. How thrilled & happy we are for all of them.
Love to you all & a big hug to Lauren.
Ken. XX

Thank you Ken, I have to say that I always appreciate your comments. You really understand our situation and the news of your daughter and other families brings us comfort. Thank you for everything that you do.

To echo Ken, you really have a gift with words, Amanda. However and whenever it happens, I hope that you and Stephen go on to have more children, you two are amazing parents and Lauren is the proof of that. I just have to comment on Lauren’s eyes…they seem to get more and more beautiful as she grows. The pic of Stephen holding her before surgery-wow, you just can’t get any brighter blue than that!

Lauren is so gorgeous in her tutu sprouting her perfect belly and perfect inny belly button.Her hair flows gorgeously. I’m tickled by that twinkle in her coy blue eyes as she gives you that allknowing smile, “I’m ok, they took care of me”. The three of you have such a warm family bond. You’ve achieved so much in such a short time and the road of continued loving and learning is yours because you live in the moment. Your minds and hearts are open and alert thus charging your intuition. No wonder you have such a brave little daughter who can summon up a smile after surgery!

Your family’s story is very inspiring. My daughter Reesa was just diagnosed with Krabbe. As I read your blog it is amazing how similar our tracks are…from symptoms, to doctors visits, to tests, etc. Also Lauren and Reesa look a lot alike! It brought tears to our eyes. Reesa’s g-tube is being placed tomorrow(also Friday the 13th) and then we are visiting Dr. Escolar in 2 weeks. We are devastated by Reesa’s diagnosis but it warms our heart to know that others are in the same situation and are handlng it with such positivity and grace.